I am the caregiver for my Father, who was diagnosed with AL Amyloidosis in September 2013. He started treatment at our local hospital. I attended a meeting of ASG in NY in February 2014. I believe this meeting saved my Dad's life. If it hadn't been for the advice of the specialists, as well as the support of other patients and caregivers, Dad may have gone through with a SCT his body likely would not have tolerated. He's since selected a different specialist and is continuing with less drastic treatment options.
I am so incredibly thankful to have come across ASG. Having a loved one diagnosed with a strange and rare disease that most doctors don't understand is life altering. It is a great comfort to have this family of caregivers and patients. Additionally, ASG has provided current medical developments promptly, and also works with medical team to help answer questions of group members.
Review from Guidestar
My husband was diagnosed with this somewhat rare condition and when I went searching for information I came across this support group and contacted them. Their response was quick, informative, compassionate and generally just very, very helpful. They pointed me to more information and connected me directly with others in their group who had the same or similar condition as my husband. A member contacted me and described the process of diagnosis he had undergone so to keep us informed of what to expect. He offered to answer any questions and gave his phone number and email for contact information. Everyone we've had contact with have just went above and beyond to help us understand the disease and offer support in a variety of ways.
In addition to receiving amazing support from this organization, I'm also a donor. The support, guidance, resources and amazing work Murial Finkel and the others in senior positions in this organization provide are indescribable for those of us who have been diagnosed with this very rare disease.
Review from Guidestar
Muriel is a godsend to those of us who are diagnosed and provides an invaluable ongoing service and is the center of a large community of support, knowledge exchange and care.
On Oct 17, 2012, my wife got diagnosed with AL Amyloidosis. It was a frantic time because of all the scary info on the web about the severity and general hopelessness of the disease. We got treated by a Multiple Myeloma Dr because we were told that was our best option.
While researching my wife found this support groups' site and we went to our first meeting. What a blessing it has been. We were educated, counseled, comforted and advised. The Doctors who are on the front lines battling this disease were there to share everything they knew to help us with our path.
We changed Doctors and got the CORRECT treatment as a result of being there. My wife would absolutely NOT be doing as we'll as she is, if not for this group.
My husband passed away of amyloidosis in 2004. At that time, not much was known about amyloidosis. I know it is not unusual today to hear the same about amyloidosis, but with Amyloidosis Support Groups networking with hospitals in the field of amyloidosis, having support groups in hospitals, holding conferences, having an on line group for patients and caregivers, booths at medical conferences, those with amyloidosis are no longer alone. I volunteer with the Ohio & Michigan Amyloidosis Support Groups and seeing the patients, families and caregivers interacting together about their symptoms & treatments is heart warming. Otherwise, they would have no one who has walked their walk or would know no one who had this rare disease.
I was diagnosed with amyloidosis over ten years ago before this organization had been founded. Slowly and steadily a handful of others affected by this rare disease came together under the dynamic leadership of a petite lady who had been caregiver to her beloved "Unc" and wanted to do something positive in his memory and take this disease on. Our numbers grew exponentially all over the country, offering information, support and awareness to patients as well as to the medical community. The online support network is amazing. Any question I have can be answered by someone who has experienced the same thing or by a medical advisor. Everyone is so supportive. What was once deemed a death sentence has become a very treatable disease when diagnosed early. This organization has saved countless lives by directing people to the right doctors and centers of excellence for appropriate intervention. Before Amyloidosis Support Groups was formed many people died from misdiagnosis and too late or dangerous therapies administered by poorly informed practiioners.
My husband was misdiagnosed as cidp 8 years ago. He has familial amyloidosis which is a rare form of
Amyloidosis and is a heredity disease in which it attacks your nerves and organs. It starts with sharp electrical pains in your feet, drop foot, and then numbness and eventually lose all use of your body parts. We attend the Chicago support meeting in every other year. Muriel heads the support meeting and we could not do without her.we need a cure. For this terrible disease in which most people And some doctors have never heard of.
I was diagnosed with amyloidosis 2 years ago and found so much incorrect information until I came across the Amyloidosis Support Group. This organization gives correct information along with caring concern for each person who asks for information. The meetings always have doctors who are specialists in the field in attendance and Muriel is the best advocate a group could ever have! It is a great organization and a wonderful help to all of us who have this rare disease.
Muriel asked me to be her Pacific Northwest Amyloidosis Support Group Co-Facilitator back in 2006. We started with one meeting a year in Portland, grew to two, and now a meeting in Seattle for a total of three yearly meetings. In my opinion, the meetings are professionally run and filled with good medical information. We always have a guest doctor who is an expert in Amyloidosis along with local doctors and other medical staff attending. The LLS joins us to provide medical and financial information as well as lunch for patients. Every meeting we have new people attending as well as regulars who provide helpful tips. I believe we have saved lives by providing the latest medical information available. I contracted AL Amyloidosis in 2002 and remain in healthy remission. Kay
The Amyloidosis Support Group has clearly done a tremendous job educating patients about this rare disease. Muriel Finkel, who runs the organization, is compassionate about her work and tirelessly helps those in need. I am quite confident that the knowledge she provides and the direction she has given to patients in need has saved lives. I whole heartedly endorse this non profit organization.
Several years ago I was diagnosed with having localized lichen amyloidosis. Thanks to meeting this group I was able to learn much about the disease and the other more serious forms of amyloidosis. Ms. Muriel Finkel, volunteers, members and friends have been giving so much of their time making this an incredible support group. Under Muriel's leadership the group has made available latest information about this very rare disease. Muriel has contact with amyloidosis experts all over the world. The group has had meetings at various locales around the country with many physicians donating their time flying in to educate, disseminate information and answer detailed & intricate medical questions. My son who is a physician is also quite impressed with this group and the leaders' dedication. Thanks, Muriel and all the volunteers for making this one of the very best rare disease support group.
Following my husband's diagnosis with this very rare disease, the Amyloidosis Support Group provided invaluable education and support. We have attended regional patient support meetings, and regularly receive emails with updated information on new research, treatment protocols and clinical trials. The support we have received from other patients, family members, and caregivers has been incredible. Thank you, ASG, for all you have done for us and for so many others.
Review from Guidestar
This group has been a blessing for those with amyloidosis. After getting the diagnosis my husband badly needed more information that would not have been available without this group and certainly no quick access to the experts for issues that he has had. Also this group has helped educate doctors so they can better diagnose a rare disease.
Support in the truest sense of the word. My mother was diagnosed with this rare disease and our family knew nothing about it. Soon I found out even the doctors didn't. Through google, I came upon Amyloidosis Support Group and founder Muriel Finkel, and quite honestly, it most likely saved my mother's life. The advice and knowledge from this site is invaluable, and even the doctor's who specialize in this disease participate in this forum.
Muriel and the others who run this site work tirelessly to educate and help those, who much like my family, are given a diagnosis of a disease that very few people know. There is emotional support as well as real experience for both patients and caregivers, and the absolute latest information on new drugs and procedures for patients. AMAZING!
This support group saved my life. I have amyloidosis, a rare disease, and did not know where to go for treatment and support. I was directed by Muriel Finkel, the leader of the group, to go Mayo Clinic or Boston University. I had an autologous stem cell transplant at Mayo in Rochester, MN, in April of last year. I was able to meet other patients due to the correspondence with members of this group. I now try to encourage and support others in this group.
A few years ago I was very sick with mysterious symptoms that doctors had trouble diagnosing. I eventually got the diagnosis of AL Amylodosis. This is a rare disease that not many doctors are familiar. Finding current information and a doctor who is able to treat it successfully is difficult. It is also a fatal disease if it is not treated in a timely manner with the correct protocol.
The Amyloidosis Support group has been a godsend for me. I am able to interact with a group of people who know what I'm going through. At the support meetings there are doctors who are experts in the state of the art treatments. Their website offers excellent information and resources. Muriel is always available to help with questions I may have.
It has been almost 7 years since my second bone marrow transplant and thanks to the doctors and the help I have received through the Amyloidosis Support group I am still alive, experiencing a good quality of life.
Amyloidosis runs in my family, and was the cause of death for my father and uncle, so it was no surprise when my brother and I were diagnosed. What was a surprise was that there would be an active, nation-wide support group for our rare disease, and that it would be the source for such timely and valuable information for us. The Familial Amyloidosis conference which has been held in the Chicago area every other year for several years now is an especially impressive event. Patients and their families come from all over to hear two days of presentations and pick the brains of internationally recognized experts: doctors and researchers. Other than transportation and lodging there is no cost. Having a rare, fatal disease can be scary and isolating, but the Amyloidosis Support Group goes a long way toward easing those parts of the experience.
The Amyloidosis Support Group provides patients and families with excellent guidance and support. They have meetings all over the country for patients and their families with physicians who have the most experience treating this rare, serious disease. They guide patients toward receiving the best care they can possibly receive. They provide on-line contact for patients and families to share their experiences. My husband, a physician himself lost his battle with amyloidosis one year ago at age 62. The Amyloidosis Support Group was a life-line for us of encouragement and compassion.
My younger brother was diagnosed with Amyloidosis a little over five years ago, and I immediately began researching the disease. The support group that Muriel Finkel started brought me a ray of hope. You see, the doctors who diagnosed him told us to prepare for the worst and start planning to lose him soon. They gave him three months to live. I called and spoke to Muriel several times, and corresponded with her via emails many more. We attended a meeting with Muriel and some of the doctors who were willing to donate their time. Not long afterward my brother was on his way to Boston Mass. for evaluation and treatment. It has been five years of knowing that God and the blessings of modern medicine have given us more time with him. He is weak, just a shell of the man he was, but his will to survive is still strong.
Without the support of this group, I would never have known about the alternatives that were available.
With the help of some other members of the support group, we were able to get to the right people and the right place for my brother to continue to believe he has a chance of life.